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DM Roder Anti-Cancer Foundation of South Australia, Adelaide, South Australia ... diagnosis of three months or less, and those diagnosed with a prostate, ...
Palliative Medicine 2002; 16: 403 ± 409

The coverage of cancer patients by designated palliative services: a population-based study, South Australia, 1999 Roger W Hunt Senior Consultant, BS Fazekas Research Officer, Southern Adelaide Palliative Services, Adelaide, South Australia, CG Luke and KR Priest Epidemiology Branch, Department of Human Services and DM Roder Anti-Cancer Foundation of South Australia, Adelaide, South Australia Abstract: Our aims were to determine the extent of coverage by designated palliative care services of the population of terminally ill cancer patients in South Australia, and to identify the types of patients who receive these services and the types who do not. All designated hospice and palliative care services in South Australia notified to the State Cancer Registry the identifying details of all their patients who died in 1999. This information was cross-referenced with the data for all cancer deaths (n = 3086) recorded on the registry for 1999. We found that the level of coverage by designated palliative services of patients who died with cancer in 1999 was 68.2%. This methodology was previously used to show that the level of coverage had increased from 55.8% for cancer deaths in 1990 to 63.1% for those in 1993. Patients who died at home had the largest coverage by palliative services (74.7%), whereas patients who died in nursing homes had the lowest coverage (48.4%). Patients who did not receive care from these palliative services tended to be 80 years of age or older at death, country residents, those with a survival time from diagnosis of three months or less, and those diagnosed with a prostate, breast, or haematological malignancy. Gender, socioeconomic status of residential area, and race were not related to coverage by a designated palliative service, whereas migrants to Australia from the UK, Ireland, and Southern Europe were relatively high users of these services. We conclude that the high level of palliative care coverage observed in this study reflects widespread support for the establishment of designated services. When planning future care, special consideration should be given to the types of patients who most miss out on these services. Palliative Medicine 2002; 16: 403 ± 409 Key words: cancer; coverage; equity; palliative care; terminal care Resume : Les objectifs de l’eÂtude eÂtaient de connaõà tre l’eÂtendue de la prise en charge des patients en soins palliatifs par des services de soins palliatifs dans le sud de l’Australie, et d’identifier les beÂneÂficiaires et les non beÂneÂficiaires. Tous les hospices et les services de soins palliatifs en Australie du sud ont note dans le Registre du Cancer de l’eÂtat l’identification des patients deÂceÂdeÂs pendant l’anneÂe 1999. Ces informations ont eÂte croiseÂes avec celles noteÂes dans le registre concernant tous les patients deÂceÂdeÂs de cancer en 1999. Nous avons constate que les services de soins palliatifs connaissaient 68,2% des patients deÂceÂdant de cancer. Cette meÂthodologie avait anteÂrieurement permis d’identifier que le niveau de prise en charge pour ces meÃmes patients eÂtait passe de 55,8% en 1990 aÁ 63,1% en 1993. Les patients deÂceÂdant aÁ domicile beÂneÂficiaient du niveau de prise en charge par les services de soins palliatifs le plus eÂleve (74,7%) tandis que ceux deÂceÂdant en clinique beÂneÂficiaient des taux de prise en charge le plus faible (48,4%). Les non beÂneÂficiaires avaient 80 ans ou plus au moment du deÂceÁs, eÂtaient originaires de la campagne, eÂtaient ceux dont l’espe rance de vie eÂtait de three mois ou moins au moment du diagnostic; ou ceux atteints d’une neÂoplasie de la prostate, du sein ou d’une pathologie heÂmatologique. Il n’existait pas de lien entre le sexe, l’appartenance socioe conomique, une zone geÂographique, la race et le fait d’eÃtre pris en charge par une unite de soins palliatifs, tandis que les immigre s anglais, irlandais et du sud de l’Europe eÂtaient davantage usagers de ces services. Nous en concluons que le haut niveau de couverture des soins palliatifs refleÁte le soutien eÂtendu aÁ la mise en place de ces services. Dans les preÂvisions des soins de

Address for correspondence: Dr Roger Hunt, Southern Adelaide Palliative Services, 700 Goodwood Road, Daw Park, Adelaide, South Australia 5041, Australia. E-mail: [email protected] © Arnold 2002

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404 RW Hunt et al. demain, il faudrait s’inte resser particulieÁ rement aux patients qui ne beÂneÂficient pas de ces services. Palliative Medicine 2002; 16: 403 ± 409 Mots-cle s: couverture en soins; eÂquite ; soins palliatifs; cancer; soins terminaux

Introduction If palliative care services are to have the capacity to meet the needs of terminally ill patients, policy makers, administrators, and clinicians will need accurate information on population need and use of these services. Such information provides a rational basis for developing strategies to provide for the terminally ill and their families. If the types of patients who do not receive and could benefit from palliative services are identified, then they can be given special consideration in forward planning. This study has a population-wide focus in examining the uptake of designated palliative services by South Australians who died with advanced malignancy in 1999. Previous studies of similar design showed that the coverage of terminal cancer patients by these services increased from 55.8% in 1990 to 63.1% in 1993. 1,2 We expected to find a further increase because these services had become more broadly established in the 1990s and were available throughout metropolitan Adelaide (where about 70% of the 1.4 million South Australians resides).3 In 1996, there were 74 designated palliative care beds (55 in metropolitan Adelaide and 19 in country regions) and 11 country palliative services that serve the large, sparsely populated country regions. 4

Methods Data collection All cancer diagnoses among South Australian residents are notified by hospitals and pathology laboratories to the State Cancer Registry. 5 Meanwhile, the registry cross-checks with death records for these cases from the State’s Registrar of Deaths and through the National Death Index at the Australian Institute of Health and Welfare. Further operational details of the registry are described elsewhere.5 In this study, designated hospice and palliative care services in South Australia notified to the State Cancer Registry the identifying details of their patients who had died in 1999. This notification was authorized under the South Australian Health Commission Act. The registry cross-referenced these notifications with the complete

list of deaths recorded on the registry, enabling classification of each cancer death according to whether there had been exposure to these palliative care services. A file of all cancer deaths without names, or other means of person identification, was then developed by the registry for data analysis. It included the following descriptor variables: primary site of cancer (three-digit ICD-9 codes), age at death, gender, country of birth, race, survival time from diagnosis, and place of death. The classifications of these variables were as indicated in Tables 2 and 3, and as described in annual registry reports.6,7 Also, place of residence was classified as within the Adelaide Statistical Division or in a country area, with postcodes in the Adelaide Statistical Division being classified by socioeconomic status.8 Statistical analyses Exposure to a designated palliative service was analysed according to these descriptors, initially as univariate predictors, using STATA 6.0 software.9 Those measured on a nominal scale were analysed using the Pearson chisquare, substituting the Fisher Exact Test for race due to small numbers. 10 Ordinal data were analysed using the Mann± Whitney U-test.10 This test also was preferred over parametric testing for age at death due to skewed distributions. Results of the univariate analyses indicated the association of each descriptor with exposure to these palliative services, without adjustment for the effects of other descriptors. We then entered all descriptor variables into a multiple logistic regression analysis, with exposure to palliative service being the outcome variable.9,10 The aim was to find the subset of predictors that were predictive of exposure to these services after adjusting for other variables in the model. Odds ratios (95% confidence limits) were derived from risk coefficients in the model. They showed the relative odds of exposure to these services for each value of a predictor variable when compared with a specified reference category. Gender was deleted from the model because it was not statistically significant (P > 0.2), irrespective of whether all tumour types were analysed or only those that affected each gender. In addition, socioeconomic status of the residential area of Adelaide and race were excluded because their elimination did not reduce the

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Coverage of cancer patients by palliative services in South Australia 405 Pearson chi-square goodness-of-fit of the model (P > 0.2). Assumptions underlying the final model, such as an absence of colinearity, were tested and found to be satisfied.10 Model calibration was checked and found to be satisfactory by comparing observed and expected numbers of cases exposed to palliative care services across quantiles of estimated probabilities, as described by Hosmer and Lemeshow. 9,11

Results

Table 1 Involvement with a palliative care service by year of death; deaths from invasive cancer in South Australia, 1990, 1993, and 1999

1990 1993 1999 a

Place of death

Palliative care involvement % (n ) No

Public metropolitan hospital Private metropolitan hospital Country hospital Nursing home Private residence

Total

P value b

Yes

36.8 (261) 63.2 (448) 100 (709) P